Continuing The Worldwide Tour to Spread Hope Around the U.S.

November 16, 2017

Dear Friends,

After my European Tour of Hope in May/June, I continued this fall in the USA and that has left me at the end of this year with wonderful long lasting impressions! The last months offered me many occasions to interact again with patients, parents, support groups and patient leaders, not only to inform them about our latest research updates and give them hope for a better future, but also to listen to and learn from them…as you know, one of our main goals. It humbled me and reminded me of the very important task OMF has, but more importantly, the patient community also gives me a lot back in return with their incredible “showers of warmth and gratitude”. I am inspired by you all. Thank you for that!

My most recent stops on our Worldwide Tour were in Minnesota, California (Dana Point and Fullerton), New York City and Boston. In Boston we had a full 45min of Q & A,

which is a wonderful format, that gives me time and space to elaborate on details and to give even more hope to patients. It was such a pleasure and honor to meet with so many new – and sometimes “old” – friends and admire their hard work. It is truly inspiring to see the incredible work of local patient groups/organizations and patient activists. In my experience – being a mother of a sick daughter – I feel that for every patient and parent it is crucial to have that sense of belonging to a community and get support, strength and useful information from each other. I encourage all American patients and caregivers to sign up at their local groups, just like many do in Europe, it will help you immensely. You are not alone in your battle, never forget that!

I am looking forward to continue my Wordwide tour in the beginning of next year in Los Angeles on February 11th. Come join us if you are in the neighborhood. I want to express my sincere gratitude to the organizers of all of the patient meetings that I went to these last months and for your warm welcome. Seeing you all, reminds me of the important task we have at OMF, and we will continue to work hard for that, until answers have been found!